Reference Services Research Articles

Prevalence of Chlamydia trachomatis in Women Who Are Candidates for In Vitro Fertilization in a Private Reference Service in Southern Brazil: A Cross-Sectional Study.

IntroductionChlamydia trachomatis (CT) has been related to fallopian tube damage and infertility. Its prevalence in the population that attend public services is known; however, there is scant data on this factor in private infertility clinics. The objective of this study is to verify the prevalence of CT among women attending a private in vitro fertilization (IVF) reference clinic in southern Brazil.MethodsThis is a cross-sectional study carried out between January 1, 2019, and August 30, 2021, at an IVF private clinic in southern Brazil. Infertile women between 18 and 50 years old, who provided a morning urinary sample for reverse transcription-polymerase chain reaction (RT-PCR) test for CT analysis, were included in the study. The variables studied included the patient's age, body mass index (BMI), duration of infertility, type of infertility, indication for IVF, and detection or not of CT in the urine.ResultsThe prevalence of CT was 10.84% (22 out of 203; 95% CI: 7.27-15.87). Patients with secondary infertility were older and had more ovarian and tubal factors compared to cases of primary infertility. The tubal factor was the most prevalent (27.3% in women with primary infertility and 35.8% in those with secondary). Time of infertility and BMI were similar between groups. Our results are derived from a single private IVF clinic which reduces the external validity.ConclusionThe prevalence of 10.84% of CT in this population raises the importance of screening for sexually transmitted infections for proper treatment and to achieve better IVF outcomes.

Provision of Library Services and Utilization of Resources by Undergraduate Students in Federal University Libraries, South-South Nigeria

This study was carried out to establish relationships between library services and utilization of resources by undergraduates in the above geo-political regions. Correlational research design was used while an instrument titled ‘Library Services and Utilization of Resources by Undergraduate Students (LSURUSQ)’ was used for data collection. The population was 2910 registered users in Faculty of Natural and Applied Sciences (2018/2019 session). The sample size was 400 determined by Taro Yamene statistical formula. The instrument was validated and its reliability confirmed using Cronbach Alpha Reliability Testing Technique. Three (3) research questions were answered and three (3) hypotheses tested. The findings revealed that utilization of library resources in these six institutions is considerably high and commendable. Effective utilization is recorded because of high quality of services carried out in these libraries. Findings from the study showed that there is a significant relationship between provision of circulation services and the utilization of resources by undergraduates in federal university libraries in South-South geo-political region of Nigeria (P=0.0008; p<0.05); there is significant relationship between provision of reference services and the utilization of resources by undergraduates in federal university libraries in South-South geo-political region Nigeria (P=0.026; p<0.05), amongst others. The study concluded that library services are very important for high quality of teaching and learning in higher institutions. The analyses showed a positive response from respondents concerning the services in the six university libraries. The study recommended training and retraining of library staff for more efficient services. It also recommended provision of more conducive working environment to enable the library staff discharge their duties more appropriately.

Individual and healthcare supply-related HIV transmission factors in HIV-positive patients enrolled in the antiretroviral treatment access program in the Centre and Littoral regions in Cameroon (ANRS-12288 EVOLCam survey).

Despite great progress in antiretroviral treatment (ART) access in recent decades, HIV incidence remains high in sub-Saharan Africa. We investigated the role of individual and healthcare supply-related factors in HIV transmission risk in HIV-positive adults enrolled in 19 HIV services in the Centre and Littoral regions of Cameroon. Factors associated with HIV transmission risk (defined as both unstable aviremia and inconsistent condom use with HIV-negative or unknown status partners) were identified using a multi-level logistic regression model. Besides socio-demographic and behavioral individual variables, the following four HIV-service profiles, identified using cluster analysis, were used in regression analyses as healthcare supply-related variables: 1) district services with large numbers of patients, almost all practicing task-shifting and not experiencing antiretroviral drugs (ARV) stock-outs (n = 4); 2) experienced and well-equipped national reference services, most practicing task-shifting and not experiencing ARV stock-outs (n = 5); 3) small district services with limited resources and activities, almost all experiencing ARV stock-outs (n = 6); 4) small district services with a wide range of activities and half not experiencing ARV stock-outs (n = 4). Of the 1372 patients (women 67%, median age [Interquartile]: 39 [33-44] years) reporting sexual activity in the previous 12 months, 39% [min-max across HIV services: 25%-63%] were at risk of transmitting HIV. The final model showed that being a woman (adjusted Odd Ratio [95% Confidence Interval], p-value: 2.13 [1.60-2.82], p<0.001), not having an economic activity (1.34 [1.05-1.72], p = 0.019), having at least two sexual partners (2.45 [1.83-3.29], p<0.001), reporting disease symptoms at HIV diagnosis (1.38 [1.08-1.75], p = 0.011), delayed ART initiation (1.32 [1.02-1.71], p = 0.034) and not being ART treated (2.28 [1.48-3.49], p<0.001) were all associated with HIV transmission risk. Conversely, longer time since HIV diagnosis was associated with a lower risk of transmitting HIV (0.96 [0.92-0.99] per one-year increase, p = 0.024). Patients followed in the third profile had a higher risk of transmitting HIV (1.71 [1.05-2.79], p = 0.031) than those in the first profile. Healthcare supply constraints, including limited resources and ARV supply chain deficiency may impact HIV transmission risk. To reduce HIV incidence, HIV services need adequate resources to relieve healthcare supply-related barriers and provide suitable support activities throughout the continuum of care.

Breastfeeding and complementary feeding in premature infants treated by a secondary reference service: a cohort study

Premature infants are vulnerable in the course of feeding practices, with lower rates of breastfeeding and inadequate feeding. To analyze breastfeeding rates, use of cow's milk and dietary inadequacies of premature infants in the second semester of Corrected Gestational Age (CGA), comparing them in two moments. This is a non-concurrent cohort with documentary analysis of medical records of 118 premature infants monitored at a secondary referral health service. Sociodemographic and perinatal data were analyzed in relation to the type of breastfeeding, feeding error and use of cow's milk in two moments: 6 months and 12 months of CGA. A reduction in breastfeeding rates was observed by the second semester of CGA (48.3% vs. 36.4%). The prevalence of dietary inadequacies was significant and showed no differences between the two periods (26.3 vs. 27.1%), but the rates of use of cow's milk increased in the second moment (11% vs. 26.3%). Birth weight less than 2000g was associated with a 4.2 times greater chance of artificial feeding in the first year of CGA. Low rates of breastfeeding, use of cow's milk and inadequate complementary feeding are expressive in premature infants whose families have low education and low income.

Does proactivity drive use? Understanding growth in chat reference services

Libraries that implement trigger-initiated proactive chat reference services see substantial increases in the number and complexity of reference transactions. However, it is not clear if this growth is a result of something inherent to proactivity, or other factors such as increased awareness of the service. To investigate this, we compare usage during periods with and without proactivity in databases in which our chat reference service is established. Steep and immediate increases when proactivity is enabled and sharp declines when it is disabled suggests that proactivity itself is driving the changes. We recommend human computer interaction (HCI) and user experience (UX) approaches to further understand chat reference service.

PAGE-B and REACH-B Predicts the Risk of Developing Hepatocellular Carcinoma in Chronic Hepatitis B Patients from Northeast, Brazil.

This study aims to evaluate the accuracy of the PAGE-B and REACH-B scores in predicting the risk of developing HCC in patients with chronic hepatitis B regularly followed up at a reference service in the State of Maranhão. A historical, longitudinal, retrospective cohort study, carried out from the review of medical records of patients with chronic Hepatitis B. PAGE-B and REACH-B scores were calculated and the accuracy of the scores in predicting the risk of HCC in the studied population was evaluated. A total of 978 patients were included, with a median age of around 47 years, most of them female and not cirrhotic. HCC was identified in 34 patients. Thrombocytopenia, high viral load, male gender and age were associated with the occurrence of HCC. The ROC curve for the PAGE-B score showed a value of 0.78 and for the REACH-B score of 0.79. The cutoff point for PAGE-B was 11 points for greater sensitivity and for REACH-B 7.5 points considering greater sensitivity and 9.5 points considering greater specificity. PAGE-B and REACH-B scores were able to predict the risk of developing HCC in the studied population. The use of risk stratification scores is useful to reduce costs associated with HCC screening.

Unmasking the Young Adults’ Library Responses during the COVID-19 Pandemic: A Case from Qatar

ABSTRACT Providing online services and assistance to library users has become the standard practice of many libraries worldwide. It has prompted many institutions to develop strategic actions to remain relevant in the absence of physical services. Although there are numerous initiatives among public libraries for teens, there is limited literature about the provision of online services and assistance for teens during the initial months of the COVID-19 pandemic. Thus, this study seeks to highlight the services, efforts, and initiatives of Qatar National Library, specifically its Young Adult (YA) Section, in planning and implementing virtual services to address the information needs of teens during a pandemic. Additionally, this study will present information that might help library professionals design their own library plans and programs to serve young adults virtually. This paper takes a quantitative approach to share the library’s experience organizing various online events and reference services for youth development amid limited access to physical services. This case study includes information about user feedback, highlighting the teens’ experience with the library’s virtual programs.

Though Virtual Reference Services Have Increased, They Face Challenges and Opportunities in the Wake of COVID-19

A Review of: Gerbig, M., Holmes, K., Lu, M., &amp; Tang, H. (2021). From bricks and mortar to bits and bytes: Examining the changing state of reference services at the University of Toronto Libraries during COVID-19. Partnership, 16(1), 1–10. https://doi.org/10.21083/partnership.v16i1.6450 Abstract Objective – To compare data about the provision of reference services at the University of Toronto Libraries (UTL) prior to and during the COVID-19 pandemic, in order to identify obstacles and opportunities facing UTL reference services in the future. Design – Survey questionnaire. Setting – A large public research university in Ontario, Canada. Subjects – Thirty-nine libraries across the three campuses of UTL. Methods – A Microsoft Forms survey comprised of 37 questions was distributed in August and September 2020. Main Results – Twenty-four libraries responded to the survey, for a response rate of approximately 62%. UTL’s chat service saw a 200% increase in September 2020 compared to September 2019 (since UTL participates in chat as part of the Ontario Council of University Libraries Scholars Portal, some traffic may have been from non-UT users). The option to book a reference appointment with a librarian was available at most of the libraries before the pandemic, and remained available during the pandemic. The survey results suggested that the shift to remote learning resulted in a significant expansion of virtual reference appointments; 75% of libraries reported offering virtual reference, compared to 17% before the pandemic. Consultations and in-depth reference questions rose during the pandemic, with a quarter of responding libraries reporting an increase. Librarians became a larger share of the staff providing reference services during the pandemic, whereas the number of libraries using library technicians or student assistants to staff their reference services decreased. There were changes to formal reference service hours as well, with half of responding libraries reporting a reduction; however, most noted that they continued to answer reference questions over email at other times. In response to the survey question asking for general comments about reference services, some respondents described worries about whether students taking only online classes would engage with online reference services, and whether overstressed faculty members would refer their students to librarians. Several respondents noted positive outcomes in moving towards a primarily online reference model, including more options to connect with students and an uptick in reference requests. Conclusion – The authors note several challenges and opportunities for libraries in shifting to a remote reference model. Challenges include confusion on the part of users about where to go for help and increased workload for librarians. Opportunities include the chance to explore how virtual technologies can be used to make reference services more easily available to library users even after physical spaces have opened back up.

User-Focused Values of Empathy, Empowerment, and Communication Are Unheralded in Previous Conceptualizations of Reference and Information Services

A Review of: VanScoy, Amy. (2021). Using Q methodology to understand conflicting conceptualizations of reference and information service. Library and Information Science Research, 43(1), 101107. https://doi.org/10.1016/j.lisr.2021.101107 Abstract Objective – To understand how experienced librarians conceptualize reference and information service (RIS), and to determine if and to what extent these conceptualizations match existing RIS models. Design – Q methodology card sort followed by short interview. Setting – Academic, public, school, and special libraries in Slovenia, South Africa, and the United States. Subjects – Sixty-six (66) librarians from Slovenia, South Africa, and the United States. Methods – The researcher asked participants to sort 35 statements about RIS from “Least like how I think” to “Most like how I think.” The participants had the opportunity to comment on their card sort. From these card sorts, the researcher used statistical methods to generate factors describing underlying conceptualizations of RIS. These factors were compared to existing literature on RIS. Main Results – Departing from the prevailing “information provision/instruction” conceptualizations of RIS, the researcher found that most respondents conceptualized RIS according to three previously unacknowledged paradigms: 1) transformation and empathy; 2) communication and information provision; and 3) empowering and learning. Fifty-three (53) of the 66 participants loaded on to one of these three factors, i.e. sorted their cards in a similar way to other participants in that factor. Factors 2 and 3 supported existing ideas of RIS in the literature, whereas factor 1 presented a novel understanding of RIS. Common to all three factors, however, is a strong focus on the user. Conclusion – Traditional models conceptualize RIS as emphasizing either information provision or instruction. The practical judgments of experienced, working librarians, however, gesture toward different, more nuanced theoretical conclusions. Beyond the traditional poles of RIS, librarians consider empathy, empowerment, transformation, and communication as other important aspects of the RIS function.

Uneven Adherence to Professional Guidelines and Potential Ethnic Bias in Service Provision Evidenced in Virtual Reference Service Interactions

A Review of: Hamer, S. (2021). Colour blind: Investigating the racial bias of virtual reference services in English academic libraries. The Journal of Academic Librarianship, 47(5), 102416. https://doi.org/10.1016/j.acalib.2021.102416 Abstract Objective – To investigate whether there is evidence for implicit ethnic bias in virtual reference service interactions. Design – Email-based structured observation study. Setting – Academic libraries in England. Subjects – 158 email-based virtual reference service interactions from one of 24 academic libraries in England. Methods – The study used a sample of 24 academic libraries across eight of the nine regions of England (excluding London). The body of the email message sent to each library consisted of one of five questions and was identical except for personalization to the institution. The first three questions were designed to be more likely to be answered in response to an unaffiliated user, and the last two questions were designed to be less likely to be answered in response to such a user. Each library received an email with each question from a different sender during each of five weeks, plus a repeat of question one in week six with slightly altered wording to serve as a control question. Emails were sent on randomized work days at different times of day. The messages were signed with one of six names representing the largest distinct ethnic population groups in England and Wales: Hazel Oakland (White British), Natasza Sakowicz (White Other), Zhao Jinghua (North Asian), Priya Chakrabarti (South Asian), Ebunoluwa Nweke (Black African), and Aaliyah Hajjar (Arab). All names were feminine and represented unaffiliated users. Email replies were coded according to a set of 27 characteristics based on the two most well-known professional guidelines for providing best practice reference services, namely, IFLA and RUSA. Main Results – 133 out of 144 sent queries received a reply, of which 66 partially or fully answered the question. 158 total emails were received (since an email might receive multiple responses), and 67 of these partially or fully answered the question. Differences in how the librarian’s reply addressed the user were evident. Hazel was the only one never referred to by her full name, whereas Jinghua was the least likely to be referred to by her given name and most likely to be referred to by her full name or no name at all. Greeting phrases were used in most responses. About 20% of responses included a reiteration of the original request. Elements of the response which could be seen as promoting information literacy skills were provided in only 11% of responses. Natasza was the most likely to be referred to another source to answer her query, whereas Jinghua was least likely. Ebunoluwa was the least likely to receive a response to her query and least likely to have her question answered overall. Conclusion – The findings point to some evidence of unequal service provision based on unconscious bias. In the aggregate, Ebunoluwa received the lowest quality of service, while Jinghua received the highest. There were several instances of inappropriately addressing the user, or what the author refers to as name-based microaggressions, and this was most common for Jinghua. The likeliest explanation is that many librarians are unfamiliar with the ordering of names traditionally found in East Asian cultures. The most noticeable result of the study is an overall lack of consistent adherence to professional guidelines. For instance, most queries received a reply within a reasonable timeframe, and greeting and closing phrases were included almost universally. However, other elements of the author’s rubric, such as those corresponding to clarity and information literacy, were not consistently applied. The results point to a greater need for librarians to follow best practice in virtual reference services. Furthermore, the author believes that best-practice guidelines must actively engage with anti-racist ideas to address the issues that were found in the study.

A Case Study on How Reference Staffing and Visibility Models Impact Patron Behaviors

A Review of: Holm, C.E. &amp; Kantor, S. (2021). Reference is not dead: A case study of patron habits and library staffing models. Portal: Libraries and the Academy, 21(2), 299–316. https://doi.org/10.1353/pla.2021.0017 Abstract Objective – To determine if reference staffing models are a predictor of reference question rates and if academic library patrons’ reference behaviors are linked to reference staffing models and desk visibility. Design – A retrospective case study. Setting – Two academic libraries at a large R3 public university in the state of Georgia, United States of America. Subjects – 10,295 service transactions (chat and in-person, including non-reference transactions related to directional and technology questions) from the 2016 fiscal year and 6,568 service transactions (chat and in-person, including only chat non-reference transactions) from FY 2017. Methods – Analysis of two years of service transaction data (July 2015 to June 2017) recorded by librarians using the reference analytics module of Springshare’s LibAnswers at three locations (virtual 24/7 chat and two libraries with different physical locations, such as centrally-located or harder-to-find service points) for three kinds of reference service modes: chat, fully-staffed in-person services, and occasional “on-call” services. “Reference” transactions were classified using the Reference &amp; User Services Association (RUSA) definition. Email, SMS/text, and Facebook inquiries were excluded from this study. One library, which had the same service model for the 2016-2017 fiscal years, served as the study’s “control” so that an analysis of service model alterations could be conducted.Main Results – The rate of chat reference remained steady, independent from the desk model employed. There was also an overall decline in reference questions from FY 2016 to FY 2017. For FY 2016, the average daily chat transaction rate was 16.1 inquiries (range: 0 inquiries for some days and up to 51 for others) compared to an average 20.5 inquiries at the two physical service locations (range: 0 to 95 inquiries per day). In FY 2017, the average daily chat transaction rate was 13.9 inquiries (range: 0 to 46 inquiries per day) compared to 6.8 transactions for the physical locations (range: 0 to 19 inquiries per day). For FY 2016, when the model shifted to on-call, the average daily chat transaction rate was 14 inquiries compared to the physical locations with 0 and .67 inquires per day. In FY 2017, the averages were 19.33 for chat compared to .33 and .33 for the physical locations. Conclusion – For the two fiscal years studied here, question rates and reference behaviors seemed to be linked to staffing models. Patrons in this study preferred a staffed and visible desk and 24/7 chat, while “on-call” services were not favored. By replacing the visible desk with an on-call model, the library created a situation where chat was the only consistent reference service offering. As a result, patrons may have viewed the visible desk as being unreliable. The on-call service model appears to have negatively affected patron behavior since, according to the data presented, patrons’ reference needs were best met by chat and a visibly staffed desk service model.

User Information Needs and Reference Services Satisfaction at Selected Federal Universities Libraries in North-Eastern Nigeria

One of the most important criteria for assessing a library is the level of satisfaction its users express with the service they get. The extent to which the library is able to anticipate user needs and integrate such predictions into collection development is a crucial aspect in influencing the level of satisfaction users have with the library's service. As a general concept, "user satisfaction" refers to how satisfied users are with a service or product they have used; as a more specific term, "library user satisfaction," it is used to describe how happy library patrons are with the library's collection and services. The study used a descriptive survey technique with a sample size of 288 postgraduate students randomly selected from four different Federal Universities in Northeast Nigeria. The data was collected by closed-ended questionnaire, and the resulting psychometrics include a CRV=1 and r-coefficient of 0.83. Frequency counts and percentages, together with chi-square tests at the 0.05 significance level, were used to examine the data. The study established that graduate students asked reference librarians for the same types of information but were dissatisfied with the level of service they received from librarians at their respective institutions. The results reveal a linear correlation between all the factors; therefore, it stands to reason that the chosen universities have the same information needs and levels of user satisfaction.

Hidden Concepts of Library and Information Science in Information Seeking Behavior Models

Modeling information seeking behavior was started in the early 1980s pioneered by Wilson. More than 70 models in the last four decades on information seeking behavior have emerged. The models delineate the concepts from cognate subjects such as psychology and sociology. The authors made an analytical study of these models and identified many concepts of library and information science (LIS); from information processing and retrieval, reference service case studies and the evaluation experiments of information retrieval systems intrinsically are hidden in these models that have not been explicitly expounded as part of information seeking traits. The Chain Indexing devised by Ranganathan has an inclusive concept into information seeking with the phrase "Sought Link" to select the relevant subject heading(s) derived from the document(s) for indexing and to assign as the sought term(s) in the subject catalogue. Lancaster in the evaluation of MEDLARS identified phrases; serendipity and novelty ratio in response to users queries to the system. The paper after an in depth study of these ideas and with an analytical review of the models implies many of the classical concepts from LIS are implicit-in information seeking patterns of users. The paper conjures up to investigate them in the models of information seeking behavior as pragmatic rather only on user perceptions.

Efficacy and safety of lokivetmab (Cytopoint®) for the control of pruritus and skin lesions in dogs with atopic dermatitis

Background and objective: Lokivetmab is the first anti-canine interleukin-31 monoclonal antibody approved in the European Union for Canine Atopic Dermatitis (CAD) management. This study aimed to assess the lokivetmab’s efficacy and safety in treating CAD cases from a university reference service, as well as the dog’s owner’s overall opinion regarding therapy. Methods: Eighteen atopic dogs were enrolled to perform two subcutaneous injections of lokivetmab, according to the protocol. In order to determine the efficacy and safety of the treatment, skin lesions, pruritus score, blood count, liver parameters and adverse side effects were evaluated over 56 days. The overall pet owner’s satisfaction about the therapy was assessed at the end of the study, and the number of animals that maintained the treatment three months after the end of the study was considered. Results: There was a significant reduction in pruritus score over the eight weeks, with 76.5% of the dogs showing a significant clinical improvement. Regarding the lesion score, 77.8% of the dogs achieved significant clinical improvement, with 61.1% reaching it in the first 4 weeks. There were no reported adverse side effects or changes in blood tests. Pet owner’s opinion regarding the improvement of both the dog and its family’s quality of life was very positive, and three months after the end of the study, 77.8% of the dogs continued their therapy with lokivetmab. Conclusion: Lokivetmab proved to be extremely effective and safe, in addition to sparing pet owners from at home drug administrations, which also contributes to their high satisfaction degree. The great specificity of this biological therapy makes it one of the most potent and promising in the CAD field.

A collaborative approach to hepatitis C testing in two First Nations communities of northwest Ontario.

Two remote First Nations communities each collaborated with an urban-based liver clinic to organize wide-spread testing, followed by linkage to care for hepatitis C virus (HCV). Involvement of community members was central to planning and conduct of the programs. Samples were obtained using dry blood spot cards (DBS). A week-long pilot study in Community 1 investigated the effectiveness of the program, using DBS. Community 2, being larger, more remote, and known to be endemic for HCV was more challenging. Three-week-long testing drives plus a stand-alone testing day were used to collect samples over 5 months. Public Health Agency (PHAC)'s National Laboratory for HIV Reference Services (NLHRS) received and tested the DBS samples for HCV and other blood-borne infections. Outcomes were measured by number of people tested, the quality of the tests, and community members' satisfaction with the program and retained knowledge about HCV, based on interviews. In Community 1, 226 people were tested for HCV over 4 days. 85% agreed to human immunodeficiency virus (HIV) testing as well. In Community 2, 484 people, one-half of the adult population, were tested. Surveys of participants showed food was the most significant draw, and Facebook the most effective way to inform people of the events. Interviews with staff and participants showed a high level of satisfaction. The results suggest this is an effective approach to testing for HCV in unusually challenging settings. Lessons from the program include the power of community involvement; and the effectiveness of a highly targeted health initiative when developed through collaboration.

Pay (No) Attention to the Man Behind the Curtain: The Effects of Revealing Institutional Affiliation in a Consortial Chat Service

This study aims to understand how users within a library consortium perceive chat service provided by staff members who are unaffiliated with the user’s home library. The researchers examined 293 chat interactions from Ask a Librarian, a consortial virtual reference service provided to university libraries across Ontario, Canada. Chi-square tests of independence were performed to explore the relationship between user dissatisfaction and instances where the chat operator revealed a mismatch in institutional affiliation between the operator and the user. Moderating variables in the relationship were investigated, including user type, question type, and operator behaviors like transferring the chat, making a referral, revealing a lack of expertise, and saying no to the patron. The researchers found that when an operator revealed that they work at a different institution than the user, patrons are more likely to be dissatisfied if they are graduate students, if their question is research-related, if the operator does not offer to transfer the chat, and if the operator does not state that they lack expertise on the chat topic. These findings suggest that chat operators should be mindful of context and relationships when revealing information about their affiliation. Users may perceive operators from other institutions as lacking knowledge about their local library, or they may be confused or alienated when receiving “behind the scenes” information about staffing that they perceive as unnecessary. The researchers recommend emphasizing and strengthening the user’s relationship with their home library and local library staff.

Epidemiology of rare diseases in Brazil: protocol of the Brazilian Rare Diseases Network (RARAS-BRDN)

The Brazilian Policy of Comprehensive Care for People with Rare Diseases (BPCCPRD) was established by the Ministry of Health to reduce morbidity and mortality and improve the quality of life of people with rare diseases (RD). Several laboratory tests, most using molecular genetic technologies, have been incorporated by the Brazilian Public Health System, and 18 specialised centres have so far been established at university hospitals (UH) in the capitals of the Southern, Southeastern and Northeastern regions. However, whether the available human and technological resources in these services are appropriate and sufficient to achieve the goals of care established by the BPCCPRD is unknown. Despite great advances in diagnosis, especially due to new technologies and the recent structuring of clinical assessment of RD in Brazil, epidemiological data are lacking and when available, restricted to specific disorders. This position paper summarises the performance of a nationally representative survey on epidemiology, clinical status, and diagnostic and therapeutic resources employed for individuals with genetic and non-genetic RD in Brazil. The Brazilian Rare Disease Network (BRDN) is under development, comprising 40 institutions, including 18 UH, 17 Rare Diseases Reference Services and five Newborn Screening Reference Services. A retrospective study will be initially conducted, followed by a prospective study. The data collection instrument will use a standard protocol with sociodemographic data and clinical and diagnostic aspects according to international ontology. This great collaborative network is the first initiative of a large epidemiological data collection of RD in Latin America, and the results will increase the knowledge of RD in Brazil and help health managers to improve national public policy on RD in Brazil.

The impact of COVID-19 on reference services: a national survey of academic health sciences librarians.

Objectives:The aim of this study was to gain a better understanding of the scope and adaptive nature of reference services provided by academic health sciences librarians over a one-year period (between March 2020 and March 2021) during the COVID-19 pandemic.Methods:In March 2021, academic health sciences librarians in the United States were invited to participate in an anonymous online survey about their experiences providing reference services during the COVID-19 pandemic. The online survey was developed, pretested, and distributed to various listservs.Results:A total of 205 academic health sciences librarians and other information professionals with health sciences liaison responsibilities in the US (N=205) responded to the online survey. The scope of reference services provided during the COVID-19 pandemic included email-based reference services (97%), virtual reference (89%), telephone (80%), text-based (33%), and in-person (31%). The most common types of COVID-related reference questions included COVID-19 treatments (53%), safety precautions (46%), vaccines (41%), and prevalence (38%). Additionally, the identification of challenging reference questions and examples of misinformation were provided by respondents.Conclusions:The results of the survey characterize the evolving nature and scope of academic health sciences reference work during the COVID-19 pandemic. Librarians reported an increase in reference questions during the pandemic and are answering them in creative ways despite barriers (e.g., limited time and reduction in resources). There is an opportunity for librarians to continue to address COVID-related misinformation. Overall, these findings provide useful insight for library practitioners and administrators planning reference services during public health crises.

HIV Pre-exposure Prophylaxis: Characterization and Adherence of Users at Risk of Infection

<p style="text-align: justify;"><strong>Objectives:</strong> To delineate the sociodemographic and clinical characteristics, sexual behavior, and the degree of adherence of users to Human Immunodeficiency Virus (HIV) Pre-Exposure Prophylaxis (PrEP), as well as the factors that impact their full adherence. <strong>Materials and Methods:</strong> This is an analytical, cross-sectional, retrospective study carried out in reference services in infectology. Subjects with at least three clinical monitoring of PrEP were included in the study. We considered as &lsquo;full adherence&rsquo; those individuals who took 100% of the recommended doses. Bivariate and multivariate analysis was performed to investigate the association between full adherence to PrEP and selected variables.<strong> Results: </strong>Most participants were male (80.1%;<em> n</em>=185), homosexual (61.9%; <em>n</em>=143), with a mean age of 32&plusmn;8.6 years. Regarding the clinical aspects, the presence of subjects with chronic kidney disease using prophylaxis drew attention. Concerning the use of PrEP, only 5.6% (<em>n</em>=13) had a degree of adherence lower than 80%. In this context, it was observed that user characteristics, such as meretriciousness and homosexuality, impacted full adherence to the method (<em>p</em>= 0.033; <em>p</em>=0.049, respectively). <strong>Conclusion: </strong>The results achieved pointed to high adherence to PrEP. However, it was observed that factors such as homosexuality and prostitution had a negative association with widespread adherence to prophylaxis. In this sense, clinical follow-up by a multidisciplinary team is essential, given the need to adopt strategies to strengthen the use of prophylaxis by specific groups and the existence of patients with clinical conditions that the use of PrEP can aggravate. <p style="text-align: justify;"><strong>Key words:</strong> Antiretrovirals, Communicable Disease Control, Pre-Exposure Prophylaxis, HIV, Men who have Sex with Men.

Clinical-Epidemiological Characteristics and Mortality in Patients with Sickle Cell Anemia: A Retrospective Cohort Study of 1980 at 2018.

PurposeTo analyze the clinical-epidemiological characteristics and mortality in patients with sickle-cell anemia (SCA).Patients and MethodsA cohort study with retrospective data, conducted in two reference hospitals for SCA treatment from January 1980 to December 2018, recorded in two reference services. With a 5% significance level, the Chi-Square and Student’s t-tests were employed in the inferential statistical analysis.ResultsA total of 128 patients with SCA were studied. Diagnosis up to the fifth day of life was made in 10 patients. There were 19 deaths, of which 12 (63.2%) were female, and the average age at death was 27.05 (± 14.78) years. The leading causes of death were septic shock and cardiogenic shock. The use of invasive medical devices was considered a risk factor for death (RR=2.63; 95% CI=1.16–5.96; p=0.018), and monitoring time up to 20 years presented a 31% reduction in the risk of dying (RR=0.31; 95% CI=0.12–0.82; p=0.011) when compared to the monitoring of more than 20 years.ConclusionThese findings are to be considered in the treatment of patients with SCA, mainly regarding early diagnosis and access to the treatment immediately afterward, since they are fundamental in improving survival and reducing severe complications.